mental health | autism | culture & well being

The ethics of ethics

So I have to make my position very clear here.

I am in no way denying the need for an independent ethics approval process, within either the academy or the NHS. The need to ensure absolute protection for vulnerable groups and individuals is paramount. Ethics reviews also ensure research methodologies and rationale are robust. As such this process maintains and ideally improves the quality and scope of research over time as long as those reviewing submissions are up-to-date regarding the prevailing attitudes of the area of study they are examining.

Bringing me to the point that I want to make.

I am studying Mental Health Recovery at Masters level. The main values and principles of this concept are those of being person-centred, of empowering the individual, of moving away from the medical-model and avoiding labels. Instead, the philosophy of recovery is about allowing people the benefit of a self-determined identity. Most importantly, to me at least, it’s about returning to people their sense of agency and avoiding institutionalisation.

Why then, when I discuss with my supervisor my final dissertation do I find out that the fact that I am working with autistic people, automatically ensures that I have to get NHS ethics approval?

Being autistic is a difference, not a disorder, or an illness, or even a disability in itself. However, because the ‘label’ or God forbid, ‘diagnosis’ is made by a doctor this group of people that I belong to automatically classified as vulnerable.

You can be autistic and vulnerable, no doubt about it, but you can also be neurotypical and vulnerable. You don’t automatically need NHS ethics approval if you are working with neurotypical particpants.

My project was a self-selecting group of individuals who would not be sought through mental health providers because I did not wish to skew my data. Biases in medicine already exist towards a male-centred presentation and the fact that more women who receive a positive diagnosis tend to have more mental health distress and more severe traits of autism means I would not be able to explore what being autistic means to those who also identfy as women some or all of the time. Furthermore, I also wanted to include women who self identified as autistic because this is often a group that is missed in the official understanding of being autistic.

In both cases I was told I would need to seek NHS ethics approval, which usually takes six to nine months and therefore blocks my ability to carry out this research within the time constraints that I am bound by.

It makes me really angry when a whole group of people have their identity co-opted by doctors, researchers and sweeping statements made about their functioning, wellness and support networks. Surely the point to a recovery focus is that we begin to understand the different needs of the people we work within research, as well as in mental health provision and support? We need to stop assuming that everyone is going to run into trouble or conversely cope fine.

Self-identified autistic women who are struggling, who do need support, are then denied such because they don’t fit the stereotype that has been perpetuated by doctors and researchers for decades. The need to categorise people absolutely not only denies vulnerable individuals and families support but also potentially delays research that could help change this situation for the better.

Even though my masters would have been a small step along the path I hoped to tread, it would have given me a chance to commit to some exploratory research and scope out my ideas more practically for what I hope will become my PhD proposal. Instead, I have had to work within the confines of a virtual project which, although still a great chance to refine my thinking is not the same as actually testing some them.

Ethics are vital for the safety of participants and ensuring projects are of the highest quality, but in their current form, which is still governed by medical-model diagnostic assumptions we still have a long way to go before we can say our research is truly recovery-focused. Ultimately it becomes another gate kept by the say-so of psychiatrists rather than the genuine needs of the people who are intended to benefit.

One Comment

Jenn, your blog will soon be added to our Actually Autistic Blogs List (anautismobserver.wordpress.com). Please click on the “How do you want your blog listed?” link at the top of that site to customize your blog’s description on the list (or to decline).
Thank you.
Judy (An Autism Observer)